By Desiree Kameka, Director of Community Engagement and Housing Network, Madison House Autism Foundation
Imagine that simply because you can’t afford or find accessible housing, your only options are to live in “the next empty bed” or be institutionalized. This happens far too often to people with intellectual and developmental disabilities (I/DD). At least 71 percent of citizens with I/DD live with a family caregiver, often without any other option.
A majority of citizens with autism, Down syndrome, cerebral palsy or other I/DDs live in poverty. Lack of access to affordable housing and support services keep over 5 million citizens with I/DD at risk of institutionalization.
This blog will address some of those factors and then offer suggestions on how to fix this major issue.
1. The cost of housing is too high.
The majority of adults with I/DD do not have full-time jobs, and their primary income is Supplemental Security Income (max. $735 a month) or Social Security Disability Insurance (depending on how much their parents earn, avg. $829). In almost every county in the U.S., this extremely low income is not enough to afford rent and still have money leftover for food, medications, etc. The focus on competitive, integrated employment of persons with I/DD is not guaranteed to help people afford housing. According to the National Low Income Housing Coalition, a renter earning the federal minimum wage of $7.25 per hour would need to work 90 hours per week to afford a one-bedroom rental home at the Fair Market Rent. Considering only three percent of citizens with I/DD currently work over 40 hours a week for at least minimum wage, and many cannot physically or mentally work 40 hours a week, assistance to access affordable and accessible housing is absolutely necessary.
2. There is a lack of access to essential life supports.
Citizens with I/DD may need help getting dressed in the morning, planning their day and a companion to assist in navigating the many aspects of community living. Some families can afford to pay out-of-pocket for these supports, but most can not. Unfortunately, public funding for these support services fails to keep up with the demand, and many individuals remain on quickly growing waiting lists, wondering “Who will offer this assistance when my family no longer can?” Delaying or denying this assistance only deepens the poverty gap, as illustrated by the following:
- Parents are often forced to leave the workforce to become a full-time caregiver to their adult child, decreasing their family’s household income.
- Adults with I/DD become increasingly dependent on others as they are not given opportunities to grow in their independent living skills. This ultimately leads to higher costs for care in the future.
- Withholding support services removes the possibility of gainful employment, thus forcing those with I/DD to remain reliant on SSI, SSDI or their family income.
In the best situations, adults with I/DD are content at home but become increasingly dependent on an aging family caregiver, making future transition more difficult. In the worst situations, they are stuck in an abusive situation without access to help.
3. Poverty forces citizens with I/DD into more restrictive and expensive settings.
Public funding for long-term support services are most often in the form of a Medicaid-funded Home and Community-Based Services (HCBS) waiver. HCBS waivers “waive” the need for institutional care to access supports and services in one’s home and community. This funding cannot be used for rent or housing. Therefore, even if one has access to waiver support services, without being able to afford a home of their own, they are forced to choose a provider-controlled setting such as group homes, adult foster care/host family homes or an institutional setting. Less than three percent of citizens with I/DD have access to residential supports in a home they control.
4. Direct support staff live in poverty too.
Not only do citizens with I/DD live in poverty, but those who support and care for them also overwhelmingly live in poverty. The average wage for support staff is $10.11 per hour. Thus, 1 in 4 live in poverty and 50 percent rely on public assistance as well. Even if a direct support provider loves their job, many are forced to leave those they serve in order to provide for their own family. This constant cycle of broken relationships is dehumanizing and leads to poor quality of life for all involved.
What can be done?
Individuals with I/DD want to live independently with supports and housing based on their person-centered plans. They see the fluctuations in the housing market, both in rent and quality, and do not want to wait for housing vouchers that may limit their future choices if they get a job or want to move to a different location. Across the country, many individuals with I/DD and their families are exploring different housing and support options in their local communities.
Save for the Future
To ensure your loved one will not be forced into “the next empty bed,” save for his or her future housing costs. Consider opening an ABLE account. An ABLE Account is a tax-sheltered 529 savings account. ABLE accounts allow people with disabilities the opportunity to save without endangering eligibility for certain benefits, such as Medicaid and Supplemental Security Income (SSI). For example, if a family saves $100 a month from the time their child with an I/DD enters pre-K, they will have over $21,000 for a down payment on a home for their loved one when he/she ages out of school at 21. SSI or SSDI can be used for a small mortgage and home expenses. Financial assistance for utilities and food may also be available for those with extremely low income. To learn more about ABLE accounts, visit the ABLE National Resource Center online.
Fight for What’s Right
Ensure HCBS waivers in your state can be used for all individuals with I/DD in homes of their own. (Medicaid calls this “consumer-controlled” settings.) If you find that your state restricts access to comprehensive residential support in consumer-controlled settings and forces citizens with I/DD to choose a provider-controlled setting, PUSH BACK! States have the authority to expand or amend current Medicaid waivers, create new waivers or even create demonstration waivers! Contact your state Medicaid Developmental Disability Agencyfor more information.
Build Relationships & Teach Inclusion
Be intentional about relationship building in your community and include people with I/DD as much as possible. Teach others how to be inclusive of their neurodiverse neighbors, and many will happily respond with friendship. In response to people with I/DD facing abuse, theft, bullying and isolation in their apartments, many local communities are developing consumer-controlled intentional communities built around the support needs, desired amenities, and friendships of residents with I/DD.
Learn more about access to public assistance and the variety of housing and support models across the country by visiting the Autism Housing Network (not autism-specific).
ABOUT THE AUTHOR
Desiree Kameka is the project lead for the Autism Housing Network. Her work for the Madison House Autism Foundation focuses on researching housing issues, advocating on issues of autism in adulthood, and presenting her work at local and national gatherings. She visits residential communities and social enterprises across the U.S. and highlights their unique victories and learning curves, while sharing stories of individuals on the spectrum or who have other developmental disabilities. Her passion is empowering autistic adults and parents to create a future that is exciting and life affirming by offering small group consultations for forming projects.